Summer 2010

18 Month Pictures

18 month stats

26.9 lbs (75th percentile)
33.5 inches (95th percentile)

large head but not increasing percentiles (which is good).

Still no talking or walking, but lots of laughing and fun!

MRI and neurosurgeon next week. Not expecting any surprises.

I will post more with some 18 months pics once I get them taken (soon). .

Some Videos!

I have a cool video recorder - but slow internet.

Taking advantage of a few minutes of downtime and a fast connection.... Enjoy!

Some from January 2010:

Jumping:

Crawling:

Sippy Cup:

Playing with Buster:

Pasta Dinner:

I'm back!

After being too busy to update the blog during tax season, a week has gone by and I can stand to open my computer for recreational purposes again.

Now that it is over, I can say that tax season went well. Andy was able to minimize his travel during his time which really helped. He also doesn't give me too hard of a time when I have to work late. During March both sets of grandparents decided to head to Florida, so we had a little less help during this time, but Nora was well taken care of between Andy, Stacie (our nanny) and my flexible work schedule (as flexible as you can be and still work 60 hours per week)!

Nora is now 16 months old. She is weighing in around 25 lbs and ~32 inches. Just about average for her age. She has had a very healthy winter which we are so thankful for. Besides a little brain surgery and some meningitis, she has been super healthy so far! She has never had an ear infection or a cold! Maybe her chromosome disorder gives her some sort of super-immunity or something. I am sure that it helps that she is not in daycare; but she does spend about 3 hours per week at therapy where there are lots of other kids. We also take her out rather frequently. she likes to grocery shop - so I am sure to take her each week. She also likes to eat out at restaurants (and so do we!), so we go out to eat a couple times per week. She has had a bunch of doctors appointments since my last posting, but noting too notable to even mention. She is doing well.

Nora development is chugging along. Her level of delay is different in different areas. However, she does seem to make progress in most areas - which is good because then it gives us confidence that she will get to her goal - just a little later than most kids. She is currently working on learning to stand & walk. She does well pulling herself up, crawling up and down stairs, and cruising along even surfaces. She is working on cruising on more complicated surfaces and hopefully getting the balance and confidence to take a step. It is hard to say when this may be - could be a month, could be a year or more. Sometimes stuff happens fast, sometimes it seems to stall.

Her most difficult area right now seems to be understanding and manipulating toys. She is physically getting good coordination with her fingers and has good strength; but has difficulty understanding (or even caring!) about some things that "typical" babies do (putting objects in a bucket (I am sure we have said "Put it IN, Nora, Put it IN!" at least 2 million times), pressing buttons on toys to make something else happen, imitating others, etc.). She has also started Speech Therapy recently. She has not said any words so far and does not appear to understand too many besides her name and "Buster!" We have been working for some time to teach her the sign for "More" (clapping hands together).

She has become a great eater - not too picky. She has given up her bottle with really no problem and just started to drink out of a baby cup with a straw. She loves to drink out of a regular cup too, but has not yet earned that privilege due to her tendency to fling her cup onto the floor when she is finished drinking. Same treatment goes for plates & utensils. (We have been leaving some larger than normal tips at local restaurants to compensate for the mess!)

She likes to laugh a lot. Particularly at Andy. But I can sometimes earn a laugh or two myself. Tonight it was a special performance of allowing her to hold out her rubber duck in the bath tub and grabbing it with my teeth, then letting her pull it out. This was particularly hilarious to her.
Here is Nora in February reading a book. She really likes books. Particularly those with things to touch. One new skill she has developed in the last couple months is pointing!

Nora really likes her wagon that she got for her birthday. Buster likes it too!

Nora climbing the stairs and happy at the top:

Reading again:
Post Chocolate Easter Bunny face:

Forgot to mention the storm! We had a big hail storm in April that did some pretty significant damage to our siding and roof. Here are some photos after the storm. It is still not fixed as we have been waiting for the insurance company to settle our claim.

Bits of siding on the ground:

Holes in the siding:

Buster - investigating the damage to the barbecue grills:

Nora enjoying breakfast by candlelight while we waited for the power to come back on (it was only off for about 15 hours).

Nora dying Easter eggs. I gave her the egg, snapped the picture, then realized that I shouldn't have given her the egg after she smashed it on her tray. Oh well.

Nora having a snack at the counter:

Nora getting ready for a walk outside with Andy!

Tax Season Hiatus

Everything is going fine. Nora is crawling all over the place and pulling herself up even!

The blog is on tax season break and will return after April 15! See you then!

Nora & her new cousin Hannah!

Christmas

Nora had a busy holiday season. Christmas Eve day was spent at home. Nora got to try out her new sled and snowpants she got for her birthday.

Christmas Eve she stayed up past her 8 pm bedtime to go to church.

Christmas morning Nora got up just after 6, so we all got up and opened presents. Andy got slippers, I got a purse, and Nora got some toys.

1 Year Update & Photos

So excited to share some of our family photos and Nora's 1 year pictures:

Nora is doing well. She is starting to scoot around on her belly. Just this week she started to sit up on her own! I saw her do it unassisted in front of me tonight! I think once she masters this she will get more mobile. She has also started to hold her own bottle! She is resistant still to the sippy cup, so Andy installed plastic handles on her bottle that are easy for her to grip. She caught on pretty quickly and can now finish her whole bottle on her own.

Couple of Videos

Grandpa babysitting

Birthday Cake

Nora is 1!

Hard to believe it has been a whole year. Well - maybe not. A lot has happened in one year actually! Nora has spent 42 days of her 1st year at the hospital. She is also one of the busiest 1 year olds around. I have to keep a special calender for her and monitor her schedule like a personal assistant. I have a rule that only one appointment per day - which still gets broken on occasion.

Nora's birthday was on December 10. It was a blizzard so I stayed home from work. Andy was travelling home from a trip to Toronto. He made it home by dinner and I made her a cupcake to try for her first birthday. She has had a bite or two of chocolate before, but never full access to a cupcake before. She didn't really get it at first - but once she got a taste she managed to stuff some into her mouth.

On Saturday we had a small party here with pizza and cake. Nora's grandparents, cousins, aunts and uncles came. She got many nice presents. New toys and new clothes. We got her a wagon which I think we will make use of when it is warmer out to pull her around the yard. May work better than the stroller on the rough terrain. She really made a mess of her cake at the party. Covered from head to toe.

One year down! Whew!

Nora the Inchworm

We are home and Nora is returning to normal. She had a good Thanksgiving and is returning to her regular schedule. She got her stitches out earlier this week and next week she will start back with some of her therapy and should be back in full swing by mid-December.

I got a new video camera for my birthday and have been taking some videos of Nora around the house. Here is one of her "crawling."

We're Home Again!

Nora was discharged yesterday!

She did so well on her feedings. As soon as we started giving her bottles she started guzzling them down. I think she has finished every 8 oz bottle she has had since then! Since her antibiotic course is completed and the tests show no more infection, she was discharged to finish recuperating at home. She is still having periodic fevers and digestion issues, but they should improve as she rests and gets medicine at home.

We came home yesterday afternoon to a house in shambles as the house painters were working. Andy made a little spot on the basement for Nora to play away from the activity. Nora's schedule is all out of whack from the hospital. She seems to only be sleeping for 3/4 hours at a time. It is like she is a newborn again! Hopefully she will do better tonight.

Andy got to sleep an entire night in our own bed for the first time in nearly two weeks! I took the night shift with Nora last night to let him get some rest.

I am easing back into work this week as Nora continues to improve. Hopefully she will be back to 100% by next week and things will get back to normal. Whatever that is.

Thanks again to everyone for their support, prayers, gifts, food, emails, cards and more. Andy, Nora and I are lucky to have so many friends and family who care about us.

I got a new video camera for my birthday so my next post will hopefully be some happy videos instead of a hospital status update!

Beginning of Week 2

The weekend was fairly uneventful for Nora. Thankfully. She is continuing to receive her feedings through her NG tube. Still not up to her nutritional goal of 45 cc/hr. Right now she is at 30 cc/hr. Her stomach is just not digesting the stuff. She hasn't vomited since Saturday though. I believe the antibiotics will stop sometime between now and Wednesday (I get conflicting info from each Dr I talk to - so I really don't know). It may be the antibiotics that are upsetting her stomach so much. So, hopefully after she comes off of them her digestion will kick into gear. It will take a couple days to get her off the feeding pump and onto oral feedings before we can go home. I think it is possible it may be by the weekend though. Who knows really.

She has been more alert each day. A little fussy and whiny, but less and less. She is still not back to her normal self. We are waiting for her to smile still. She plays with toys and rides quietly in the stroller, but no smiles yet. She used to like to make all kinds of lip smacking and kissing noises too. I haven't heard one yet.

She has become very distrustful of anyone who approaches her which is sad. She used to be happy to see anyone - even strangers. Now she just wants to be left alone. She doesn't like people to even listen with the stethoscope or take her temperature. Even right now she is going to sleep for her nap - she has been lying still and quiet with her eyes open in her crib for about a half hour. She is not interested in having me come sooth her to sleep. She just wants to be left alone. Hopefully as we get home she can regain her trust in people and will forget about all the needle pokes and discomfort of this place.

We are in somewhat of a schedule now with our parents both helping to watch Nora in the evenings. Andy has the graveyard shift which is the hardest. He has tried to get sleep during the day at home, but I don't think he has had more than 6 hrs of sleep in the last 10 days. I have been doing the day shift so am able to keep a normal nighttime sleep schedule of 8 hours or so.

Deja Vu to last year - the contractors are showing up at our house today in the middle of this mess. We are getting the entire house painted on the inside. Luckily it is an easier job than our bed/bath remodel that was going on during the NICU stay last year. It should be done by the end of the week instead of taking 8 weeks!

Thanks again for all of your support. It is helpful to have so many people praying for Nora!

First Hurdle Over, Now on to the Next

Yesterday and today Nora slept all day. I mean ALL day. She had to be woken up to eat and just slept right through getting her temp checked and people listening to her through their stethescopes all day. She falls asleep while eating. So, it is back to the NG tube! Just like when she was a tiny baby! The tube give us a way to get her formula. She has switched to higher calorie formula to try to increase the nutrition content. Unfortunately, she is still vomiting though. I would say she keeps some of it down, but probably about half comes back out. I think the next step is to put her on more of a continuous drip of formula rather than slug it all to her little belly at once. I think she may be able to come home once her feeding is stable. Her antibiotics are all oral now, so there may not be a need to stay here.

When she is awake, she is not herself yet. She is reaching for toys and her blanket - so that is good. Her arms and legs seem to be working well. She is a little unstable sitting, but it will come back. She just has a dazed wide-eyed stare and hasn't smiled in days. Hopefully this is the effect of some of the drugs she is on. In the last day she has come off a lot of them though. She is not on any pain meds but Tylenol. She is getting some anti-seizure meds which can make you sleepy. We just have to wait and see.

Surgery complete. Now time to get better.

Yesterday morning Andy work me up with a phone call at 5:45 am saying that Nora's surgery was going to be at 7 am. Ugh. It is a 45 minute drive from our house to the hospital. The nurse got on the phone and said that she would tell them it had to be at 8 since I was not there and it wasn't a good time for her anyway (I bet - shift change is at 7). So, I took a quick shower and managed to get here at 7 am anyway.

15 minutes after I got here they said it was going to be at 11 am. So, we sat and Nora slept pretty much until the surgery. Overall it went good. The Dr took some fluid from her brain, tested it, and the test came back negative for bacteria. They will do a 2 day culture as well which will come back tomorrow. She is all sewed up now with nothing hanging out of her head. Well - except for her IV.

She was generally good yesterday since she had no vomiting - except for coming out of anesthesia. Although she also had no food really, so I am not sure if that is why we had not vomiting or what. Also, there were no "spells." However, she was extremely irritable when awake and drugs didn't seem to help too much which is quite frustrating.

The latest is the nurse just came in and said they want to up her calorie content in her formula and put in a feeding tube. This does not make much sense to me since she is eating fine - it is keeping it down that is a problem. The nurse said that it didn't look like she ate much yesterday. Duh, we had to keep her from eating before the surgery - which we thought was at 7, then 8, then 11 - then after the surgery she was nauseous so we only gave her pedialyte. It is not because she won't eat! So, I haven't discussed it with the doctor yet, but I am going to make them give her a chance to eat the formula by mouth before we give her the tube.

I am reminded of the NICU days in that I am now getting pulled into the drama of the Bronson workplace and getting annoyed with things. Yesterday, the PICU nurse called down to the OR nurse and asked if they could put in a new IV during her surgery. Her old one was getting a little sore and it is quite an ordeal to get one started and much less traumatic for her to do when sedated. When we got down to the pre-op, the transport nurse told the anesthesiologist that the PICU wanted a new IV. He said "Do they want us to clip her nails too?" Ohhh, I knew that wasn't going to end well. Of course, word got out and all the nurses up here have been fuming about it. Plus, the IV that they put in during surgery was no good anyway. They put it in a difficult spot on her left wrist and it was clotted off by the time she got back to the room. This morning Nora got a new IV in her head. Sounds gross, but it is actually better because then her arms and legs are free.

There is also a battle of equipment. When Nora gets moved from her room, to CT, to OR, etc they take along a monitor and cords and stuff. They are very protective of their equipment and there is always a debate over where it goes when she gets back to her room. I don't know why they don't just label the stuff.

Oh well, I hope things start improving so I have the luxury of spending more energy worrying about this petty crap.

Day X -- Ok am not going to count the days in the title anymore.

So what happened today? Let me think. Well, I got here at 7 am. Andy stayed the night last night. He got here in the afternoon after her first "seizure" and didn't go home until this afternoon! Hopefully he is getting some sleep at home now since he is coming to relieve me at 11 pm.


When I got here, Nora was sleeping with Andy in the recliner. Not 30 minutes after I was here, her monitor went off alarming us that her oxygen was dipping. The nurses and doctors sprang into action and got her back into bed and gave her some oxygen. Pretty startling awakening for Andy! It was dark in the room and there was a lot of confusion so it is not really clear that it was a seizure.


Later in the morning she took a nap in my lap. She was scheduled to go down to the OR at 11 to have the CSF in her ventricle sampled. First though, we decided to draw some blood that we needed to test. After a few pokes and quite a bit of protesting, Nora decided she had enough and she started some sort of seizure - like activity again. Another bunch of people came in, got her settled and she fell asleep. Additionally, she started getting a rash as a result of her antibiotic - called Red Man Syndrome. We decided with the PICU doctor that she did not need to go to surgery today since she was having these issues. We postponed it until tomorrow.

That is the last excitement she had today - thankfully. The rest of the afternoon and evening so far she has been sleeping and eating without any drama. The neurologist says he doesn't think that the seizure are actually seizures. They have some characteristics of a seizure, but not all. He just called them "spells." How is that for modern medicine? I thought people had "spells" in old novels. Anyway, he thinks the "spells" are not harmful to her as long as she doesn't get deprived of oxygen - which she won't be in the hospital. He also thinks they will stop when the inflammation in her brain clears. She is taking anti-seizure medicine anyway - just in case.

More tomorrow. Thanks to everyone for your concern.

Day 3 in PICU

Today Nora was sleepy, but seemed a bit more comfortable since she didn't seem to need pain medication in order to sleep. She fell asleep on her own a few times. Her neurosurgeon plans to draw fluid from her brain tomorrow to test to see if the infection is clearing. Since he needs to pull it from inside the ventricle, it will be done in the OR with sedation and the whole works. He will test the fluid immediately to see if there is bacteria, but the full results don't come back for a couple of days (sort of like the days long ago when I used to do "bug counts" at the paper mill!). If the immediate test (called a gram stain) shows no signs of bacteria. If there is bacteria, he will install the ventriculostomy - which she had with the surgery in the first place - so we have easier access to collect more fluid later if needed. If there is no bacteria, then she will just continue with the antibiotics for a couple of weeks and should be better.

Of course, things are always changing though.

This afternoon she had a seizure. This is a first for Nora. We have always been told to expect that she may be at risk for seizures, but she has not had one yet. After the seizure she had an EEG which showed she was no longer having a seizure (which was obvious if you ask me since she was playing with the sock covering her IV hand the whole time). The EEG did look a bit "abnormal" but she has never had an EEG done before, so it is hard to say why it looked like that. I think that if you have ever looked at pictures of Nora's brain (which I have decided not to post on this blog since they are sort of startling), you would be surprised if any sort of normal EEG would come out of it. So, for that reason I am not too shaken by any abnormal EEG. I think that her normal is likely different than most people. She seems to be acting normally now, although still sick and fussy. At any rate, we will now have to get her neurologist pulled back into the mix to sort out the seizure business. She is on some anti-seizure medication now to help prevent it from happening again. Maybe it is just from the infection. Or fever. Or - okay, I will stop speculating and just wait until tomorrow's post to find out more...

Vocabulary Word of the Day: Subdural Empyema

Day 2 in the PICU.

Nora is still resting, getting a lot of IV antibiotics and frequent pain medications. When she wakes it is clear that she is still uncomfortable, so she gets dosed with more pain meds that put her back to sleep. She isn't eating much - or doing much of anything - right now.

She had another CT scan this morning. The neurosurgeon was pleased with how it looked. It appeared that the drain he put in the subdural cavity (area between the brain and skull) removed a lot of the fluid that was building here. Now it is just a question of why there was fluid there. It could be that the infection caused a buildup of fluid in that area, or it could be that by reducing the pressure in the right ventricle, the ventricle has become smaller and the brain is pulling away from the skull, leaving a space that will be filled with fluid. Option 1 is quite serious because it means she has an infection of the CSF which must be carefully treated otherwise there can be really terrible outcomes. Option 2 is also serious since it means she would probably need a shunt surgically installed now to drain the fluid from the subdural area. We will probably not get a real clear answer anyway, so I think that both options will be addressed. The brain is a very sensitive system where pressure changes in any one area affect the whole thing (remember PV=nRT?). So, it is quite complicated. I am thinking I should have paid closer attention in Fluid Dynamics!

We are working on getting a schedule set up assuming we are going to be in this thing for the next while. I really want to have someone here 24 hours with Nora so when she wakes she sees a familiar face. Andy and I probably can't sustain 12 hour shifts for 3 or more weeks straight, so our parents will pick up some shifts to make it easier. Andy will do nights. He doesn't mind it. I stayed here last night and it wasn't too bad, but I have an awful ache in my neck from this recliner I slept in. They have rooms with beds available, but I would prefer to stay in her room so I can be there when she gets woken by the nurse every couple hours.

Anyway, I will be on days and probably be updating the blog once in a while since it can get a little boring. Boring is good though. It means nothing catastrophic is happening. Stay tuned.

Back in the PICU again

Well, we have had a little set back. Nora wasn't feeling so hot yesterday and today she was really not right. Andy and I called the doctor and took her into the hospital. After a couple hours in the ER and some scans and tests, she was back up in the PICU getting ready to have another drain put in her head between her brain and skull. The drain is working now and some fluid that was building up around her head has been removed. Tests of the fluid have shown that she has and infection in the cerebral spinal fluid. She has been getting antibiotics and has been running a little bit of a fever so has been taking some Tylenol.

Tomorrow she will have another CT scan so we can get a better idea of what parts of her brain are inflamed from the infection. Other than that, I think she will just get dosed with these antibiotics for a while until the infection is gone. I suppose if the infection is messing with her ability to properly drain the ventricles, we may be looking at some sort of shunt surgery? Who knows. The neurosurgeon will be back in tomorrow and may have some more to say after the CT tomorrow.

In any event, this will likely be a much longer stay at the hospital than last week. The doctor in the PICU has told us to expect about a 3 week stay. Like old times!

Oh yeah, today is my 33rd birthday. Not quite the party I planned on.

Home Sweet Home

Nora came home on Halloween! All in all her surgery and hospital stay was a success. She is back to herself pretty much. Today we took her to get her stictches removed. She will have a scar on her head, but it should be pretty well concealed by her hair. It is sort of hard to see already since she has brownish hair that disguises the railroad track of stitch marks on her head. Now she just has to step up her therapy a bit to work on her delayed left side. She will get another MRI in a few weeks to check out how her brain is responding to the new path for the spinal fluid that she got in the surgery.

Thanks to everyone for your concern during Nora's surgery!

Almost Home

Just waiting for the neurosurgeon to do his rounds but we expect to be sent home today. Nora is doing well and I think we can say that the surgery was a success. She is pretty much back to normal. Her CT scan showed the pressure relieved in her brain. We are going to have to backtrack a bit with her PT because her left side is now not working as well as her right, but everyone says that it will come back over time with some work. Now we will just have to follow up with MRIs periodically and monitor her head size to make sure the fluid is still escaping properly over time.

It was one year ago at this time that we first found out about Hydrocephalus. In the end of October last year we first met with the genetic counselor and the perinatologist and had them reassure us that everything would be just fine and that these things are so rare that they were sure it would turn out to be nothing. We have been through a lot since then. One thing we know for sure is that these doctors don't have the answers to everything. They are just people trying to do their jobs. We will just have to wait and see what is next...